Thursday, February 28, 2013

Among the 46.0 million adults who received income-based government assistance in 2011, 30.4 percent of them had a disability, according to a report released today from the U.S. Census Bureau.

The report, Disability Characteristics of Income-Based Government Assistance Recipients in the United States: 2011, offers information about the occurrence of disabilities among people 18 and older who received income-based government assistance. The information is based on data from the 2011 American Community Survey.

"On average, people with disabilities have lower employment and earnings; therefore, understanding what assistance people with disabilities receive may help governments better coordinate and administer their programs," said Bernice Boursiquot, a Census Bureau statistician and co-author of the report.

People with a disability include those having vision, hearing, cognitive, ambulatory, self-care or independent living difficulties. Among recipients of public assistance, 18.2 percent had difficulty walking or climbing stairs, 14.6 percent had trouble leaving home to go shopping or visit the doctor without assistance, and 14.2 percent encountered trouble with memory, concentration, or making decisions.

Recipients received assistance in three forms: cash assistance (cash or money income), in-kind assistance (services, goods or vouchers) or both cash and in-kind assistance. Among people who received both cash and in-kind assistance, 58.3 percent had a disability. Among recipients of only cash assistance, 33.2 percent had a disability. Recipients of only in-kind benefits had the lowest disability rate at 22.6 percent.

This report also found that 22 states had disability rates above the national estimate of 30.4 percent among those receiving assistance. In comparison, 15 states had rates below the national estimate.

States west of the Appalachian Mountains had higher rates of disability among recipients of income-based assistance. In comparison, states in the Southwest and along the Eastern Seaboard had lower rates.

West Virginia, Kentucky and Arkansas were three of the top five states for disability prevalence in the total population, as well as in the total population receiving government assistance. In West Virginia, 26.8 percent of people with disabilities reported having ambulatory difficulty, defined as severe difficulties walking or climbing stairs.

The American Community Survey provides a wide range of important statistics about people and housing for every community across the nation. The results are used by everyone from town and city planners to retailers and homebuilders. The survey is the only source of local estimates for most of the 40 topics it covers, such as education, occupation, language, and ancestry and housing costs for even the smallest communities. Ever since Thomas Jefferson directed the first census in 1790, the census has collected detailed characteristics about our nation's people. Questions about jobs and the economy were added 20 years later under James Madison, who said such information would allow Congress to "adapt the public measures to the particular circumstances of the community," and over the decades allow America "an opportunity of marking the progress of the society."

Tuesday, February 26, 2013

As posted at 'The White House Blog'In less than a week, harmful automatic cuts — known as the sequester — take effect, threatening hundreds of thousands of jobs, and cutting vital services for children, seniors, people with mental illness and our men and women in uniform.

To prevent a costly, self-inflicted wound to our economy and middle class families, President Obama put forward a plan to avoid these cuts and reduce the deficit by cutting spending and closing tax loopholes. Now it's up to Congress to act. Learn more about President Obama's plan here.

Still have questions about what the sequester is, and why American famillies and our national economy face this threat? We've put together the explainer below using some helpful background information President Obama laid out in a statement on Tuesday. Check it out:

$2.5 TRILLION IN DEFICIT REDUCTION

"Over the last few years, both parties have worked together to reduce our deficits by more than $2.5 trillion. More than two-thirds of that was through some pretty tough spending cuts. The rest of it was through raising taxes — tax rates on the wealthiest 1 percent of Americans. And together, when you take the spending cuts and the increased tax rates on the top 1 percent, it puts us more than halfway towards the goal of $4 trillion in deficit reduction that economists say we need to stabilize our finances."

SO WHAT'S THE SEQUESTER? WHY NOW?

Now, Congress, back in 2011, also passed a law saying that if both parties couldn’t agree on a plan to reach that $4 trillion goal, about a trillion dollars of additional, arbitrary budget cuts would start to take effect this year. And by the way, the whole design of these arbitrary cuts was to make them so unattractive and unappealing that Democrats and Republicans would actually get together and find a good compromise of sensible cuts as well as closing taxloopholes and so forth. And so this was all designed to say we can't do these bad cuts; let’s do something smarter. That was the whole point of this so-called sequestration."

"Unfortunately, Congress didn’t compromise. They haven't come together and done their jobs, and so as a consequence, we've got these automatic, brutal spending cuts that are poised to happen next Friday."

"Now, if Congress allows this meat-cleaver approach to take place, it will jeopardize our military readiness; it will eviscerate job-creating investments in education and energy and medical research. It won’t consider whether we’re cutting some bloated program that has outlived its usefulness, or a vital service that Americans depend on every single day. It doesn’t make those distinctions."

A WAY FORWARD, A BALANCED APPROACH

"There is a smarter way to do this –- to reduce our deficits without harming our economy. But Congress has to act in order for that to happen."

"Now, for two years, I’ve offered a balanced approach to deficit reduction that would prevent these harmful cuts..."

"I am willing to cut more spending that we don’t need, get rid of programs that aren’t working. I’ve laid out specific reforms to our entitlement programs that can achieve the same amount of health care savings by the beginning of the next decade as the reforms that were proposed by the bipartisan Simpson-Bowles commission."

"I’m willing to save hundreds of billions of dollars by enacting comprehensive tax reform that gets rid of tax loopholes and deductions for the well off and well connected, without raising tax rates."

"I believe such a balanced approach that combines tax reform with some additional spending reforms, done in a smart, thoughtful way is the best way to finish the job of deficit reduction and avoid these cuts once and for all that could hurt our economy, slow our recovery, put people out of work. And most Americans agree with me."

To see state-by-state effects of the sequester on jobs and middle-class families, Visit:
http://www.whitehouse.gov/blog/2013/02/22/what-sequester#states

Monday, February 25, 2013

DALLAS - A 12-year-old girl in a wheelchair was detained for nearly an hour at DFW Airport while trying to get through security.

Shelbi Walser was traveling with her mother on Sunday for a trip that's become routine. The seventh grader lives with a genetic bone disorder and was on her way to Florida for another rare medical treatment.

She's never had a problem flying, but this time Transportation Security Administration agents claimed she had bomb residue on her hands.

"It was frightening. I kinda got mad," she said.

The agents would not allow Tammy Daniels to get close to her crying daughter so she started recording on her cellphone.

"Are you kidding me? We're going to get you out of here in a second, okay?" she said in the video.

"I said, 'What do you mean? What did you test her for?' 'Oh she tested positive for explosive residue.' Okay... at that point you would think they would test her wheelchair, but they did nothing. Everything just seemed to spiral out," Daniels said.

The mother and daughter said a bomb specialist showed up and several agents began talking on their cellphones all while other passengers were speaking up in support of the girl.

"There were people saying, 'Really? You're going to do this to her? Y'all have to take her somewhere private where she's not out in the public and everyone can see her,'" Shelbi said.

Daniels said the agents then suddenly told them they were free to go and offered no explanation about it being a false alarm or anything.

"It was a little much. I don't know what to learn from this one. Somebody, they need to go back to the drawing board on this one," she said.

The TSA responded to questions about the encounter with a statement that said in part, "TSA's mission is to safely, efficiently and respectfully screen nearly two million passengers each day at airports nationwide. We are sensitive to the concerns of passengers who were not satisfied with their screening experience and we invite those individuals to provide feedback to TSA through a variety of channels."

Published on Dec 15, 2012
As reported by 'USNewsMedia' http://www.youtube.com/watch?v=Ns4t3RKFcU8&list=FLcBUak3PWKSTWJtqLkBQ9qg

Sunday, February 24, 2013

Legislation sponsored by state Rep. Carol Sente (D-Vernon Hills) would fast track the timeframe for public buildings in Illinois to meet or exceed federal accessibility standards established in 2012. Illinois’ accessibility standards have not been changed since 1997.

“At one time, Illinois was a leader in accessibility standards for persons with disabilities,” Sente said. “However, the Environmental Barriers Act has not been updated for over a decade, and we have fallen behind. I am proposing that we set a clear timetable for these updates with the goal of comparing our guidelines with the most recent version of the Americans with Disabilities Act and determining where Illinois wishes to mirror the federal law and where we wish to be more stringent.”

House Bill 1462 would require the Capital Development Board to update the Illinois Environmental Barriers Act using the federal Americans with Disabilities architectural guidelines as a model. The Americans with Disabilities Act was originally signed into law in 1990 and has since been updated on the federal level as recently as 2010.

“Ensuring that our public buildings are accessible to all members of our community is critically important,” Sente said. “We have an obligation to give the most vulnerable members of our community every opportunity to be independent and self-sufficient.”

For more information, please contact Sente’s full time constituent service office at (847) 478-9909, or e-mail RepSente@gmail.com.

Saturday, February 23, 2013

"CBS This Morning" report By Jeff Glor, Ben Eisler from January 7, 2013

(CBS News) Medicare fraud costs taxpayers an estimated $60 billion annually. One problem area is power wheelchairs, which cost the program hundreds of millions of dollars a year. Over the course of a several month "CBS This Morning" investigation, numerous people who have sold and prescribed these wheelchairs told CBS News that the industry bullies doctors, and that Medicare is writing checks that should never be cashed.

The SCOOTER Store is the largest supplier of power wheelchairs in the country -- the TV ads are everywhere. According to Kantar Media, it spends more than a hundred million dollars on them every year. If you saw one and became intrigued, Brian Setzer was one of the men you talked to next. He worked as a salesman at The SCOOTER Store, from 2006 until 2011.

Setzer and three other former SCOOTER Store employees told "CBS This Morning" that the company's strategy was to "bulldoze" doctors into writing prescriptions, so people would get the chairs, whether they needed them or not. "They were just pushing harder and harder to get chairs sold," Setzer said.

And, once a doctor has written a prescription, Medicare rarely checks whether the chairs are actually necessary. The issue was crystallized when the Department of Health and Human Services Inspector General released a report, finding that industry-wide, 80 percent of Medicare payments for power chairs are made in error, with most going to people who don't need them or lack proof they need them. From 2009-2012, government auditors found The SCOOTER Store overbilled Medicare by as much as 108 million dollars.

Senator Bob Corker, of the Special Committee on Aging, is looking into this very issue. "Just think about that. We have people within the bowels of government here, that know we have an eighty percent error rate, and it just continues," Corker said.

Three former employees of The SCOOTER Store told "CBS This Morning" the company also ranked doctors based on whether they'd prescribe chairs, and that it had a program specifically to get chairs for people that physicians had already deemed ineligible. Brian Setzer says incessant phone calls and visits wore doctors down.

"They pushed the doctors so hard that they didn't want anything to do with you," he said.

Physicians say the industry's television commercials are another problem. Dr. Jerome Epplin runs a family practice in Litchfield, Illinois. He says the ads give patients a sense of entitlement, and that some have left his practice because he's refused to prescribe them a chair. "They're led to believe they need them, deserve them, and if we don't sign for them, they get upset and go elsewhere."

When the ads aren't enough, Epplin says reps from some companies have gone as far as to accompany patients to their appointments with him. "There's a significant amount of pressure when that happens," he says. "Obviously they have the right to do it if the patient says it's OK, but I don't think they should do itI don't think the representative belongs in the room at all. It's between me and the patient."

The SCOOTER Store would not agree to an on-camera interview, but told "CBS This Morning" it's committed to improving quality of life for seniors and the disabled, saying its "rigorous internal screening process -- including a Medicare-required, face-to-face doctor examination -- disqualifies 88 percent of those seeking Medicare or private insurance reimbursement for power mobility devices."

The company did agree to give back $19.5 million for chairs it admitted should not have been paid for. They said the amount was less than 4 percent of the Medicare payments it received in the last two years.

But according to the Special Committee on Aging, the company only agreed to a repayment after the HHS Inspector General threatened to suspend it from federal health programs. And while The SCOOTER Store disputes the government's audits, the government found the company owes as much as four times what it's agreed to repay.

In September, the government launched a pilot program to address the issue. It requires Medicare to approve chairs before they're paid for. But the same companies - with the high error rates - were hired to run it, processing payments to suppliers from the government. Sen. Corker, not convinced the pilot will make a difference, says he is looking into alternative solutions. Meanwhile Senators Herb Kohl and Richard Blumenthal have written a letter to the Centers for Medicare and Medicaid asking why it didn't require The SCOOTER Store to repay more money.

Corker says it's all an example of a bureaucracy that is broken. "It just must make your blood boil. It made mine boil," he told "CBS This Morning." "Taking total advantage of taxpayers, and damaging a program that is one seniors count on and depend upon."

Approximately 150 federal and state law enforcement agents launched a massive raid on one of the biggest perpetrators of government fraud in America: The Scooter Store. Yes, that's right. The nation's largest provider of single-person electric vehicles and power chairs is the target of a federal investigation, probably because many of the people who ride around their "personal mobility devices" don't actually need them.

In January, CBS This Morning ran a cutting exposé on the company, detailing how it "railroads" doctors into prescribing the chair for their patients, most of whom are on Medicare or Medicaid. That way they can bill the government for their highly dubious medical device, while the patient gets a cool new scooter without paying for it, and The Scooter Store makes a nice profit. Doctors and former employees told CBS that the company would harass physicians with non-stop phone calls and offices drop-ins in order to wear them down. The company even has a special department devoted to getting chairs for patients who had already been ruled ineligible by Medicare. No doubt the pressure comes because their ads guarantee that the chair will be free if they can't get you qualified.

The Scooter Store is so good at getting the chairs that a government audit found that they had overbilled Medicare by over $100 million between 2009-2012. It's no wonder their ads brag that "No other company will work harder to make you mobile."

FBI agents would not provide details on any crimes or possible charges behind the search warrant, but 1,200 employees of the company were escorted from the headquarters in New Braunfels, Texas, on Wednesday, and were not allowed back into today, as investigators continue to dig for clues. Police also searched a related management company that The Scooter Store's sales records.

Unfortunately, the FBI won't be going after the handful of customers who know they don't need a scooter or wheelchair, but still want the government to buy them one. Sort of like the people at airports who experience "wheelchair miracles" leaping up and running to their gate after an airport employee has helpfully pushed them most of the way. Officials at Los Angeles International Airport estimate that 15 percent of the people who request wheelchair assistance are faking it, because they want to skip lines and get on board their flights faster. We're sure most Scooter Store customers are unhealthy people, innocently going along with the company's promises of getting out of the house more, but the disability fakers are the real criminals if you ask us.

Friday, February 22, 2013

The next webinar in the Board's monthly series will take place March 7 from 2:30 – 4:00 (ET) and will feature an open question and answer session with Board accessibility specialists on the ADA and the ABA Accessibility Standards. Participants are encouraged to submit questions on the standards as they apply in new construction or alterations in advance of the session through the webinar site. Questions also can be posed during the webinar.

Back by popular demand! This is your chance to get answers to your "burning" questions about either the 2010 ADA Accessibility Standard or the Architectural Barriers Act Accessibility Standard. Session participants are requested to submit questions in advance. Accessibility specialists will answer questions submitted in advance during the first half of the session, leaving time in the second half to answer questions in the live session.

Presenters:
Rex Pace
Dave Yanchulis
Marsha Mazz

To register for this free webinar, visit www.accessibilityonline.org.
For the U.S. Access Board visit: http://www.access-board.gov/

Thursday, February 21, 2013

The following article appears in the March 2013 edition of 'Chicago Magazine'.

[photo: Lunchtime at Our Place]

Three local families confront the looming social crisis.

Article By Cassie Walker Burke

The peas must be sorted. On a recent Friday morning, several 20-something volunteers buzz around a North Shore basement that houses a food pantry for the needy. Pouya Bagherian, an outgoing young man who is prone to mistakenly throwing valuables into the trash, goes through bags of donations. Jason Kaplan, a quiet type who is most comfortable plugged into his iPod, checks each can of peas to make sure it has no puncture marks. And Frank Craven, who is slight and wears thick-rimmed glasses, organizes the cans on a shelf so that the earliest expiration dates are in front.

These tasks require an enthusiasm for repetition that many people would find mind numbing. Not these three. Bagherian and Kaplan, both 26, are autistic; Craven, also 26, has a rare autism-like condition called Lowe syndrome. Coming here lets them build real-world skills such as organization and teamwork, plus earn the satisfaction of a job well done. Equally important, it gives them a reason to get up in the morning.

Despite the countless news reports about the meteoric rise of autism-spectrum diagnoses (1 in 88 American children today vs. 1 in 150 in 2000) and the myriad books and websites about raising youngsters who have this developmental disorder, there is little discussion of or planning for what those kids are to do when they are no longer kids. An estimated 300,000 of them are expected to hit adulthood in the next decade (see “A Looming Tsunami”). Their fate is an increasingly urgent social problem, especially in Illinois, where the state budget is under immense pressure. “I’m very concerned,” says Kevin Casey, appointed by Governor Quinn in 2011 to overhaul the state’s Division of Developmental Disabilities. “There are not enough services for everyone. If we don’t get the pension crisis solved, it’s going to get worse before it gets better.”

Frank Craven’s postteen experience illustrates the problem. After finishing high school at New Trier in 2005, where he took a mix of regular and individualized classes, he began attending a publicly funded life-skills and job preparation program run by a consortium of North Shore school systems. Four years later, when his 22nd birthday arrived, he got a Friday afternoon sendoff party with pizza and cupcakes. And then he went home. That next Monday was what parents sometimes refer to as as the Day the Bus Does Not Come.

[photo: Jane Gallery and son Frank Craven at Wilmette’s Our Place program, which she founded]

His mother, Gallery, the former owner of a food store and catering company, and father, Buz Craven, a corporate tax attorney, spent the months leading up to their son’s birthday combing Chicago’s North Side and North Shore. Their goal: find a day program that would (a) get their son off the couch and keep him happy and engaged and (b) meet his physical needs, such as insulin monitoring. (Frank’s condition affects not only cognitive functioning but also metabolism, muscle development, and vision.)

The couple found very few programs that met the first requirement and none that met both. One reason for the scarcity is that “research hasn’t focused on the needs of these adults, and it hasn’t focused on interventions [for them],” says Jennifer Gorski, a professor at the University of Illinois at Chicago who runs a local training center for the state-funded Autism Program of Illinois. Many existing day programs for autistic adults, parents charge, amount to little more than warehouses.

Afraid that Frank would languish in front of the television, gain weight, and grow more depressed by the day, Gallery finally threw up her hands and did the only thing she could think of. She started her own program. Called Our Place, it provides a range of constructive activities—such as organizing that food pantry—five days a week for some 50 adults with autism and other developmental disabilities.

Turns out that Gallery is in the vanguard of a pioneering group of parents and grandparents. Frustrated by the current options and more than a little worried about the future of their loved ones, they’re rolling up their sleeves and creating their own solutions. For example, Forest Park resident Debra Vines, a former hairstylist, is focused on building a community that will help get autistic adults out of hiding; retired CEO Terry Kline recently started a west suburban version of Our Place.

While they have a tough road ahead, says Katy Neas, a Washington, D.C.-based disability rights lobbyist for the charity Easter Seals, it is people like these who will ultimately upend the current system of care for developmentally disabled adults. “It is because of them that we are even as far along as a country as we are,” Neas says. “The dedication of these families to each other has made a world of difference."

* * * end part 1

[photo: Josh Stern, 24, who is autistic, rides a Pace paratransit bus to his job at a North Shore bank.]

Though it is now more prevalent among American children than AIDS, cancer, and diabetes combined, autism is still largely a mystery. People with the condition (autism is five times more common in boys than girls) typically struggle with social interaction, communication, and speech; they often suffer from other cognitive, psychiatric, and neurological difficulties too. Many are prone to repetitive behaviors, obsessive-compulsive tendencies, withdrawal, or tantrums. Although there is no known cure, a regimen of interventional therapies has been shown to help, especially if started early.

And so begins an emotionally grueling and costly cycle that parents of Our Place participants know all too well: years of intensive speech, occupational, and play therapy that augment the child’s regular school day. “I was driving all over Chicago to take Josh to his appointments,” recalls Wilmette resident Linda Stern, referring to her autistic son, now 24.

Sometimes that investment yields significant results. Like Frank Craven, Josh Stern attended New Trier, where he excelled at math, and went on to the area’s life-skills program. A counselor helped him land a part-time job in a suburban bank before he turned 22. There he uses his photographic memory to help match vehicle identification numbers with car loan paperwork. In three years on the job, he has not once called in sick. Stern earns $8.25 an hour, more than many autistic workers (a loophole in the federal Fair Labor Standards Act allows employers to pay the disabled below minmum wage). “We’re very fortunate,” says his mother. “The people at the bank have really taken ownership of him. And he feels important.”

Gallery knew that her son would probably never be high-functioning enough to hold a job like Stern’s. But she believed that it was crucial for him and other developmentally disabled people to keep building practical life skills, learn to curtail counterproductive behavior, serve the community in a visible way, and—most of all—make friends with other people around their age. “I wanted to create a place with meaning and purpose,” Gallery says. “A place that accommodates different levels of skills. A place that makes work feel rewarding. A place where Frank could build relationships.”

Did other parents feel the same way? Gallery decided to gauge interest by passing a sign-up sheet around the bleachers at a Special Olympics basketball tournament. “I got 30 signatures in one day,” she says.

An information session in 2008 in a Wilmette Park District rec room spawned a series of Saturday night potluck socials for potential participants. A nucleus of 20 families emerged, each of whom gave Gallery $100—enough for her to file for nonprofit status and get insurance.

Early on, one of the most vexing questions Gallery faced was whether to seek public funding for Our Place. That would mean wading into a maze of differing local, state, and federal rules and regulations. “The more you look into these sorts of things, the more you realize there are roadblocks everywhere,” she says.

Figuring that meeting state licensing requirements could hold up Our Place for more than a year, Gallery decided not to apply for state or federal support. Instead, she petitioned New Trier
Township administrators for a community grant. They awarded her $20,000 (and have granted her as much as $65,000 each year since)—enough to hire an energetic program director, 29-year-old Stacia Swan, who has a background in special education and case management. Gallery signed a lease for space at a Wilmette church.

She was committed to keeping the cost of attending Our Place reasonable. Rather than the $85 or so a day that she says most programs in the area charged, Gallery set day fees at $55, or $8.50 an hour. (Participants may attend in anything from three-hour increments to full nine-hour days.)

In October 2009, when Our Place opened, 26 developmentally disabled teens and adults had signed up. By 2011, there were 40. Gallery then hired an executive director—William Johnson, 51, an affable ex–Aon executive—to manage daily operations and fundraising. (Fees cover 40 percent of the budget; the rest comes from grants and donations.)

Swan anchors each day around volunteer tasks in the morning and other group activities in the afternoon. The Our Place volunteers work at the New Trier Township Food Pantry, the Mitchell
Museum of the American Indian in Evanston, or the Winnetka Thrift Shop. “Many of the tasks involve organization, which our guys are good at,” says
Johnson. “It’s an opportunity for them to be useful and do something they enjoy.”

Swan views lunchtime as a prime opportunity to reinforce life skills. So Our Place participants help shop for groceries, make the meals, and clean up. Lunch is also an excellent time for conversation practice. On a recent day, the young people gathered around the dining table at the light-filled program headquarters are good-naturedly ribbing Jason Kaplan about his weekend plans.

“What about your girlfriend? Are you bringing her to the social this weekend?” one man asks.

Kaplan sighs. His eyes open. “We’re still getting to know each other.”

Not every exchange is so calm. One usually charming 25-year-old occasionally has a frustrated outburst. The staff has given him a color-coded key chain: green signals happy, red angry, and yellow in between. He flashes yellow to show when he’s feeling agitated and needs to take a break. “I am also working on saying ‘excuse me’ before interrupting,” he says, after jubilantly, well, interrupting.

Recently, Gallery has begun hoping that a few members of Our Place could take another step toward self-sufficiency and become roommates. After all, research shows that both autistic adults and their families are happier when the former live in the community, either with a friend, with a spouse, or in a group home with fewer than six people. “When you’re interacting with your neighbors,” explains Mary Kay Rizzolo, the associate director of the Department of Disability and Human Development at the University of Illinois at Chicago, “you make friends. You have more employment opportunities. You learn self-advocacy.”

But Gallery knows that the goal of moving an autistic adult child to a small group home can be an elusive one. That’s partly because the state of Illinois hasn’t provided much funding for such homes. The vast majority of the roughly 150,000 Illinoisans with developmental disabilities live with relatives. In 2009, only 38 percent of the remainder lived in a small group setting—the lowest percentage in the nation except for Mississippi.

The rest lived in nursing homes or in Illinois’s big institutions for the mentally disabled, seven of which are state run. Even as institutionalization gradually fell out of favor nationally, the Illinois government, until recently, kept giving more money to institutions than to community-based group homes or to families who wanted to keep their loved ones living with them. That’s puzzling, given that the latter two options are far less expensive: Illinois spends $57,000 to $182,000 a year in state and matching federal dollars to institutionalize a developmentally disabled person vs. an average of $45,000 to pay for a small group arrangement or $19,000 to cover assistance at home.

But the terrain is shifting. In 2011, Illinois settled a class-action lawsuit brought by the Chicago-based advocacy group Equip for Equality. As a result of the consent decree, the state has begun funneling more resources to disabled individuals or their guardians—to the tune of $33.5 million in 2013. (Illinois has also closed the Jacksonville Developmental Center and started the process of closing other larger state-owned institutions.) They, in turn, are supposed to have the option of using that money to pay for things like day programs or vocational training—or for spots in group homes, if they can find them. Says Tony Paulauski, executive director of the Arc of Illinois, a grassroots advocacy organization: “Now the issue is: Are there enough places for people to go?”

* * * end part 2

[photo: Debra Vines, founder of support group The Answer, Inc., with her son, Jason Harlan, at their Forest Park home}

Jane Gallery was fortunate: on the North Shore she found a supportive community of parents of other developmentally disabled adults, all of whom were committed to getting their children out of the house and into the real world. But on the West Side of Chicago, in the predominantly African American community of Austin, Debra Vines and her family felt alone.

When Vines’s younger son Jason, now 25, was first diagnosed with autism, she says, she found that special education programs and interventional therapies were virtually nonexistent in the neighborhood. Vines began taking the youngster by train to therapy sessions on the North Shore and in Aurora. She recalls being amazed at seeing so many disabled people out and about. “I remember saying, ‘Jason cannot be the only black person with autism!’ ”

When Jason was eight, Vines and her husband, James Harlan, a security officer, moved the family to the near western suburb of Broadview so their son could enroll in a public school with a stronger special-needs program. (They have since moved to nearby Forest Park.) Vines says that other parents there began marveling at how much information she had gathered about raising an autistic child.

Soon her phone number was being passed around, and strangers with autistic kids of their own were calling to ask for advice on everything from applying for government support to dealing with autism-related financial and marital stress. “There were national agencies starting at the time, but there was a real grassroots need,” she recalls. “Parents felt like they were being bounced all over the place, and they just wanted to talk to somebody who knew the community, knew what was there, and could understand.”

By the time Jason was in his late teens, Vines and Harlan were gearing up to form a support group, which they would call The Answer, Inc. In its early meetings, Vines learned that the other parents tended to keep their children locked up at home. Many were afraid that if their sons displayed signs of unusual or unpredictable behavior—tantrums, odd vocalizations, rocking—in public, they might fall victim to bullies, criminals, or trigger-happy police officers. (Those fears escalated with the fatal 2011 shooting of Stephon Watts, a 15-year-old autistic boy who was gunned down in his Calumet City basement by police officers after he lunged at them armed only with a butter knife, his parents say. Police contend that the officers acted in self-defense.)

If parents had fewer fears about safety, Vines reasoned, they would feel more comfortable letting their children out of the house. That in turn would lower the rates of depression, self-injury, weight gain, and even diabetes that tick upward after school days come to an end. She has seen some of those problems in her own son, a quiet young man who is happiest tearing up pieces of paper; he gained weight after he aged out of his transition program at 22.

Vines knew that educating law enforcement personnel would be key. So she got certified as a first-responder trainer and began hosting classes for police officers in Maywood, North Riverside, and Forest Park during their shift roll call. “It’s basic,” she says. “We teach them signs and symptoms of children with autism and how to handle someone who has run away from home or is having a medication imbalance.” (The first thing she tells them: Stay calm.)

When parents told Vines that they wanted grocery stores to be more accommodating as they shopped with their families, she started a similar training series for small neighborhood markets on the West Side. She also teaches bullying prevention and disability awareness at two high schools and two park districts. “We need to get the community ready for our children,” she says.

Just as important, Vines knew, would be for the autistic young adults to have something positive to do once they ventured outside. So she began organizing occasional social outings, such as group dances with DJs, which have evolved into her latest project: a twice-a-week dance and exercise class for autistic adults. She found an open classroom in the Beverly Recreation Center in Broadview, hired an energetic dance teacher, and asked members of The Answer, Inc. to spread the word.

It’s 6 p.m. on a recent weeknight, inside a squatty concrete recreation center on an otherwise pitch-black stretch of the industrial corridor connecting I-55 and I-290, and the party is ramping up. Vines steers in her son, who is wearing a stylish black tracksuit. She beams with pride as the participants—who pay $150 for the 16-week session—come bouncing through the door. As Jason and seven others practice the night’s dance routine, Vines scurries around the room in her stretch pants, praising correct steps, helping diffuse potential meltdowns, and barking at her son when he slows down. (“You’re not tired,” she chirps, her hands on her hips. “You’re only 25!”)

Meanwhile, the dancers’ parents, who look relieved that they are off the hook for the next hour, gather to talk. A major topic of conversation: funding letters they’ve gotten from the state. One of the most crucial functions of The Answer, Inc.—which has worked with 550 families so far, mostly African-American—is to help members navigate the byzantine process of applying for financial assistance from the government.

To get a shot at public funds beyond Social Security disability payments (maximum: $700 a month), a disabled Illinoisan over the age of 14 must get on a waiting list known as PUNS (Prioritization of Urgency of Need for Services). The list, which now contains more than 20,000 names, determines who gets services such as residential placement, speech therapy, and continuing education classes—and what agency will pay for them.

The wait to be plucked off the PUNS list can be years, according to families I interviewed, unless the individual faces a crisis such as homelessness or a caregiver’s death. (The state declined to release statistics on the average wait time.) And up to this point, for many, that wait has been in vain. According to a 2013 State of the States report prepared by the University of Colorado, only 13 percent of U.S. families who choose to care for their adult disabled children at home receive more than sporadic public support beyond Social Security.

What about that 2011 consent decree that’s supposed to shift the way Illinois spends funds earmarked for this population, putting less money into institutions and more into the hands of disabled people or their guardians? In the past 12 months, the state notified 1,000 residents that funds are coming their way. Remarkably, most of the parents sitting in that rec center in Broadview were among them.

Unfortunately, those parents say that they are confused about why they got the notification letters and what the bureaucratese in them means. “We’re trying to work with families to make sure they get the services they need and to let them know they are entitled to their choice of providers,” says Kevin Casey, the director of the state’s developmental disabilities division.

Sometimes, Vines says, she thinks about Jason’s diagnosis and how she mourned that her younger son would not have a typical life, like his older brother. She admits that she still feels a twinge of sadness knowing that most of her friends’ children are getting married or graduating from college. “Jason isn’t going to go to college or give me grandchildren . . .”

She pauses. “But he’s happy. And he makes me happy.”

In this rec center in an unremarkable corner in the near western suburbs, moments of happiness do not go unnoticed, for they are transcendent. Every few minutes, a 23-year-old autistic man—who has an odd vocal tic that sounds like a cross between a bark and a growl—uses his hands to sign with his mother. When asked what he’s communicating to her, his mother smiles and translates. Class has barely begun, and he’s asking her to promise they’ll come back next week.

* * * end part 3

[photo: A dance and exercise class for young autistic adults in Broadview]

One day in June 2011, Jane Gallery’s phone rang. The man on the other end introduced himself as Terry Kline. He had two autistic grandchildren who lived in Wheaton, he explained, and he had heard about Our Place. But it was an hour’s drive away. Did she know of anything similar in the western suburbs?

Gallery didn’t. But she issued Kline an invitation: Come to Wilmette and she would teach him what she had learned.

He jumped at the chance. Kline, 64, the retired CEO of a container manufacturer, is completely enamored of his grandchildren, Emma, 13, and Jack, 9. Emma was diagnosed with autism at 3, just as her mother learned she was pregnant with Jack. Emma was an aggressive toddler, but she has made great strides at Clare Woods Academy, a school for special-needs children in Bartlett. Jack is higher functioning.

After one particularly trying day, their mother, Sarah Donnelly, made a confession at her kitchen table that swiftly knocked Kline and his wife, Ginny, out of their retirement comfort zone. “It was one of those 24/7 days, and Sarah just looked at us and said, ‘I don’t know what we’re going to do when Emma turns 22 and ages out of services,’ ” remembers Kline. As a CEO, he was used to having answers. In this moment, he had nothing to say.

The Klines were determined to find a solution, and they wanted to give themselves a decade head start. “We visited all kinds of places and came to the conclusion that no one was talking about what was going on with [autistic] adults,” Kline says. “There are programs in DuPage County that have a recreational focus, so they fill gaps of time with outings and field trips, and they do fine programs. But we wished there was something more meaningful.”

That’s when Kline called Gallery. After her invitation, he made the trek to Wilmette nearly a dozen times to observe her in action. During his visits, Gallery warned him about the challenges that lay ahead if he wanted to open his own program. The myriad difficulties with securing public financing. (She advised him to adopt a private model.) The issue of finding permanent staff who are reliable. (A revolving door of part-timers is not optimal for autistic people, who find change difficult.) The problem of tracking down disabled adults once they age out of transitional programs. (“They drop out of sight,” says Gallery.)

Kline was undaunted. “People have said to me, ‘Why would you start a program at this [slow economic] time?’ ” he says. “I say, ‘The need is there.’ ”

And so last October, in the basement of a Presbyterian church in Wheaton, the nonprofit Connection of Friends opened its doors to 22 autistic and other special-needs young adults from several western suburbs. Its calendar recalls that of Our Place, with group conversation practice, guided exercise, lunch, art, music therapy, and community work. Volunteers come in to teach yoga and gardening. A low-lit quiet room with lava lamps and hand-sewn beanbag pillows offers a space where participants can go to relax if they feel anxious or angry or if they sense a seizure coming on.

Unfortunately, the amount paid by the families of those participants ($8 an hour) covers only a third of Connection of Friends’ expenses. The rest of its budget comes from foundation grants and private donations. So far, the Klines have poured in a considerable sum (Terry Kline declines to specify how much) to get the program up and running. They are planning three fundraisers this year to help bridge the gap.

When asked his ultimate goal for his grandchildren, Kline says that, quite simply, he wants them to have a place where they can make friends who understand their needs and struggles. Where they forge bonds that last after the organizers turn off the lights for the night. Maybe Emma or Jack could, one day, meet someone who would be a nice candidate for a roommate. Because the inevitable truth we all face—whether disabled or not—is that our parents (and our grandparents) won’t be around to take care of us forever.

“What makes a good life for anybody?” asks Jane Gallery. “Doing meaningful work, being engaged in their community, and making friends. We all want, and need, to have friends. I wanted to create an environment where my son would make friends. And he has. That’s why he is so happy now.”

Back on the North Shore, Frank Craven and the other members of the food pantry volunteer crew break down empty boxes, tidy up, and make their way to the van that will take them back to Our Place. Before Gallery switches off the light, she points out that the cans of peas are perfectly spaced.

* * *

WHERE TO FIND HELP

Five key resources for autistic adults or their guardians

ACCESS LIVING: The disability rights group can help autistic adults find community housing in Chicago and provides support for independent living. accessliving.org, 312-640-2100

THE ARC OF ILLINOIS: A nonprofit advocacy organization, it gives advice on navigating the state PUNS list and more. thearcofil.org, 815-464-1832

THE AUTISM PROGRAM OF ILLINOIS: This state-funded program maintains an online guide to financial and legal issues that autistic adults commonly face. theautismprogram.org, 217-525-8332

[photo: Charlie Bowers (center), an eighteen-year-old senior from Bluffton High School, Bluffton, S.C., watches as F/A-18 Hornets from Marine Fighter Attack Squadron 115 takeoff and land on the Marine Corps Air Station Beaufort flightline, Feb. 15. Bowers who suffers from Stargardt's disease, a macular degeneration that causes vision loss to the point of blindness, wanted to experience military aviation before the disease worsens his vision.]

Story by Lance Cpl. Sarah Cherry

MARINE CORPS AIR STATION BEAUFORT, S.C. Marine Corps Air Station Beaufort helped a Bluffton High School senior experience his dream – before it becomes impossible. Eighteen-year-old Charlie Bowers got a tour of MCAS Beaufort, Feb. 15, and had no idea about the surprise tour until he got to the Air Station.

“We have today off from school,” said Charlie Bowers, “My mom told me yesterday that we have to be up early. I asked what we were doing, and she said don’t worry about it, it’s a surprise. I had no idea what it was.”

Rebecca Bowers, Charlie Bowers’ younger sister, knew about the surprise two days before and said she had a hard time keeping it a secret. “He’s my brother, and I tell him everything anyways.”

Charlie Bowers has a degenerative disease called Stargardt’s disease, which is causing him to slowly go blind by destroying the part of the eye called the macula.

“Usually macular degeneration comes out in your 60s and 70s,” said Charlie Bowers. “Stargardt’s is the younger version of that.”

Charlie Bowers has blind spots in the center of his eyes, and they’re getting bigger. As time progresses, he will have to rely more and more on his peripheral vision. He has already started learning Braille and how to use a walking stick, although he doesn’t need those skills yet.

“I can do the same things as the next guy, I just have to do it a little bit differently and it takes a little bit longer,” said Charlie Bowers.

Lt. Col. Sean DeWolfe, operations officer for Marine Aircraft Group 31, led Charlie Bowers, his parents and his younger sister on a tour of the base. The family had the opportunity to see F/A-18 Hornets in the hangar, ask questions and learn about the parts of the plane and landing procedures.

They were able to watch jets take off from the flight line, and Charlie Bowers and his sister Rebecca even got to take the flight simulator on a test run. While he was in the flight simulator, Charlie Bowers wore a MAG-31 flight suit that bore his last name on the black and gold nametape.

Charlie Bowers said he liked that he was able to get “up close and personal” with an F/A-18 engine that was being changed out in the Marine Fighter Attack Squadron 115 hangar.

“My impression of Charlie is that he really represents the youth of today,” said DeWolfe. “I think serving others is in his DNA. He wanted to serve in the military, and now that he can’t do that, he’s found another avenue, another way to continue to serve. When I first met Charlie today, he was pretty reserved. By the time he got into the simulator and started to fly, he had a smile he couldn’t wipe off of his face.”

Charlie Bowers’ parents said that despite Charlie’s level-headedness, they were dismayed that their son wouldn’t be able to follow his dream.

“He always wanted to fly, and he always wanted to be in the military,” said Debbie Bowers, Charlie Bowers’ mom. “As we learned about his disease, it became evident that there was no way he was going to be able to fly. He kept turning it around and he decided, maybe I’ll just build them.”

Charlie Bowers is still following his aviation ambition, but from a different angle. He has been accepted to Embry-Riddle Aeronautical University with plans to become an aerospace propulsion engineer.

Charlie Bowers said flight has been a lifelong interest of his, and his favorite part of his tour of was the flight simulator.

“It was nice to sit in there and do something that I’ll never actually be able to do, but have the experience of having done it,” said Charlie Bowers. “I’ve always been fascinated with aviation, with flight in general.”

“It was extremely important for me to see my brother live his dream,” said Rebecca, “It makes me proud of him that he’s come this far, I’m happy to see him happy.”

Los Angeles — It happens regularly, airport officials say. A traveler requests a wheelchair, gets pushed to the front of the security line and screened—and then jumps up out of the chair and rushes off into the terminal.

"We call them 'miracles.' They just start running with their heavy carry-ons," said wheelchair attendant Kenny Sanchez, who has been pushing for more than 14 years.

Wheelchair assistance is a vital, widely used airport service, making travel feasible for the elderly and people with disabilities, injuries or limited capability to navigate long airport distances. The 1986 Air Carrier Access Act requires airlines to provide free wheelchair service to anyone who requests it. No description or documentation is required.

Airports across the country say more able-bodied travelers have figured out they can use wheelchairs for convenience, making waits a lot longer for travelers with genuine needs.

At Los Angeles International Airport, airlines and companies that provide wheelchair service estimate 15% of all requests are phony, said Lawrence Rolon, coordinator for disabled services for Los Angeles World Airports. Airport officials estimate nearly 300 wheelchair requests a day are bogus. "It's just a big mess,'' Mr. Rolon said. "Abusers are really impacting the operation.''

Disability advocates say occasional long waits and potential missed flights are a problem. Last year, disability-issue complaints filed by air travelers with the Department of Transportation jumped a hefty 18.3% (DOT doesn't break out wheelchair issues). Los Angeles issued a reminder four days before Christmas last year that free wheelchair services "should be reserved for persons with disabilities and senior citizens with mobility issues.''

Seattle-Tacoma International Airport says it has had an uptick in reports of wheelchair cheating. Orlando International Airport has worked with staff and skycaps to dissuade use unless reserved in advance. The problem continues there even though the airport's very high volume of wheelchairs tends to cancel any timesaving advantage from making a bogus request. "It is a touchy issue and very difficult and can be sensitive,'' an airport spokeswoman said.

Contractors paid by airlines have to fill wheelchair requests on a first-come basis. So a 1:50 p.m. walk-up request might claim an attendant waiting for a 2 p.m. reservation.

Wheelchair-service providers say some passengers running late for a flight will request immediate wheelchair service simply to cut to the front of the security line or to avoid a typical hour-plus wait at Immigration when entering the country. Some just want help with multiple heavy carry-on bags.

Some departing passengers want early boarding privileges and perhaps a seat with extra legroom in the front of the plane, which airlines reserve for passengers with disabilities. Some arriving international passengers see it as a sign of status when an attendant is waiting to greet and guide, even if it's a wheelchair attendant.

LAX handled nearly 2,000 wheelchair requests a day in 2012, or more than 1.1% of all passengers. The heaviest use is on international arrivals. Nearly 4% of passengers arriving from abroad last year requested wheelchairs. An inbound international flight scheduled to land at LAX with 20 wheelchair requests may see that number balloon to 50 requests at the last minute, officials said.

"Some people are scared when they land so extra help makes them more comfortable,'' said Robert Enriquez, manager of wheelchair service for Aero Port Services Inc. "It causes a lot of strain because that employee could be helping someone else.''

Airline service cuts and rule changes have driven some of the increased wheelchair demand. Some travelers say when they request assistance, an airline gate agent or flight attendant often automatically recommends wheelchair assistance. After airlines began refusing to gate-check large strollers, some mothers with infants resorted to wheelchair service to travel the long distance to a boarding gate with bags and a baby. (Umbrella strollers still can be used in terminals and checked at gates; larger strollers have to go with large suitcases as checked baggage.)

At many big hub airports, airlines do provide motorized carts to help passengers, disabled or not, with long distances. (You can flag one down or ask an airline agent to request a pickup.) Most carts run between gates for connecting flights. American Airlines also offers a paid "Five Star'' escort and assistance service, including access to its Admiral's Club lounges, at nine U.S. and five international airports. The service costs from $125 to $275 for one passenger, depending on the airport, plus $75 for each additional adult and $50 for each additional child.

Angela Strickland, a wheelchair dispatcher at the Southwest Airlines (LUV) terminal at LAX, says questionable requests rise during holidays and other busy periods when lines are long and people worry about missing flights.

How can she tell a legitimate request from a bogus one? Sometimes a young, physically fit person will run in and request a chair. A lack of mobility equipment, such as a cane or crutches, might be a tipoff. There's an obvious tell: "People walk in with high heels on and say they need wheelchair service,'' Ms. Strickland says. Travelers with real infirmities almost always wear safer shoes, even if it means carrying nicer shoes in bags, she says.

Most airlines say they don't have any way to quantify bogus requests because they are barred from asking about need or refusing service. "We do our best to accommodate our customers' needs,'' a spokeswoman for Seattle-based Alaska Airlines said.

Costs to an airline can reach more than $40 per wheelchair run because an attendant often spends more than an hour on each passenger. "It's an expense we simply must budget for because the service is vital to customers with disabilities,'' said a Delta Air Lines spokesman.

Abuse adds as much as 20 minutes to the wait for a wheelchair for some disabled passengers at LAX, disability advocates say. The wait at the Tom Bradley International Terminal averages 30 minutes.

Sam Overton, president of the Los Angeles City Commission on Disability and a former California assistant attorney general, says he sometimes waits 20 to 30 minutes for a pusher at the airport. One change he would like to see: First serve those people who made advance wheelchair requests, which are widely seen as legitimate. People who make last-minute requests should be helped after those who reserved chairs, he said.

"It's the dark side of human nature," says Mr. Overton, who has used a wheelchair for 58 years. "There's this mind-set at the airport—this thin veneer of civility. People are focused on themselves and don't think this is a service that other people need."

The U.S. Transportation Security Administration has apologized to a Missouri couple after its agents traumatized the family's 3-year-old, wheelchair-bound daughter during a screening and told the mother she could not film the process.

The Feb. 8 run-in Annie Schulte and her disabled daughter had with TSA screeners at Missouri's Lambert-St. Louis International Airport as they were heading to Orlando was caught on tape and posted to YouTube. In the video, 3-year-old Lucy can be seen crying as TSA agents tell Schulte she cannot film the screening.

"To me it was pretty offensive because I was really tuned in when she said that, immediately I'm like, 'OK, hold on, something doesn't seem right.' So I did tell her I was going to wait because I was going to grab my phone," Schulte told ABC News.

Schulte says it all started when TSA agents asked to pat down Lucy and screen her wheelchair. Schulte asked to tape it, she said, but an agent didn't like that.
In the clip, an agent tells Schulte, "it's illegal to do that." She then tells the agent that they cannot touch her daughter unless she can record it.

"The problem is I don't allow anyone to touch my little daughter without being able to record it," she said.

Her husband, Nathan Forck, said Lucy was treated unfairly.

"It bothers me that my daughter was singled out, specifically because she is in a wheelchair," Forck said.

The family says the final straw came when agents refused to return Lucy's stuffed animal Lamby, even though it had already been scanned.

The TSA issued the apology overnight.

"TSA regrets inaccurate guidance was provided to this family during screening and offers its apology," the agency said. "We are committed to maintaining the security of the traveling public and strive to treat all passengers with dignity and respect. While no pat-down was performed, we will address specific concerns with our workforce."

The family says it accepts the TSA's apology, but wants screeners to receive more training to prevent such an incident from reoccurring.

They eventually made it to their final destination, Disney World, where Lucy got to meet Mickey Mouse.

WASHINGTON — The Obama administration issued a final rule on Wednesday defining “essential health benefits” that must be offered by most health insurance plans next year, and it said that 32 million people would gain access to coverage of mental health care as a result.

Kathleen Sebelius, the secretary of health and human services, said that in addition to the millions who would gain access to mental health care, 30 million people who already have some mental health coverage will see improvements in benefits.

White House officials described the rule as a major expansion of coverage. In the past, they said, nearly 20 percent of people buying insurance on their own did not have coverage for mental health services, and nearly one-third had no coverage for treatment of substance abuse.

Ms. Sebelius said the partial standardization of benefits would make it easier for consumers to compare health plans.

In the market today, she said, “it is difficult for consumers to make well-informed choices” because benefits, deductibles, co-payments and other features vary widely among competing health plans.

The rule says the new health insurance policies can be offered at four levels of coverage. Under the least generous policies, known as bronze plans, consumers will pay 40 percent of the costs of covered benefits, on average, and insurers will pay the rest. Under the most generous policies, known as platinum plans, consumers will pay 10 percent. The administration, however, declined to set a uniform national standard and allowed states to set many of the specific requirements.

Minimum benefits will vary from state to state, as each state will have a benchmark plan, reflecting coverage typically offered by employers. In more than 30 states, the benchmark, or standard, is an insurance plan offered by Blue Cross and Blue Shield.

Insurers in each state will generally be required to provide all benefits required by state laws adopted before Dec. 31, 2011. States can require additional benefits, but will have to pay the extra costs themselves.

Carl E. Schmid, deputy executive director of the AIDS Institute, an advocacy group, said he had hoped the federal government would set explicit, uniform national standards.

“We are disappointed,” Mr. Schmid said. “We thought the federal government would spell out essential health benefits in more detail. Patients respond differently to different drugs and often need multiple drugs at the same time. Under this rule, patients might have access to a total of 500 drugs in one state and more than 1,000 in another state.”

Access to autism treatment may also differ. Stuart Spielman, senior policy adviser at Autism Speaks, an advocacy group, said that 32 states had laws requiring coverage of autism treatments and that other states were considering legislation to impose such requirements.

The rule limits the costs to consumers in several ways. For health plans offered in the small-group market, the deductible amount, paid by consumers before insurance kicks in, generally cannot exceed $2,000 for individual coverage and $4,000 for family coverage. Total out-of-pocket costs will also be subject to limits. If a health plan has a network of doctors and hospitals, consumers may be required to pay more if they go outside the network.

The new rule generally applies to all health insurers offering coverage in the individual and small group markets. States will have primary responsibility for enforcing the standards. The federal government said it would step in if it found that a state was not doing an adequate job of protecting consumers.

Federal officials acknowledged that many policies sold in the individual insurance market did not cover all the services required in the new rule. The administration said that many small business health plans “meet or are close to meeting the coverage requirements.”

Under the rule, health plans must provide benefits that have not always been provided by commercial insurers. For example, insurers must cover dental care and vision services for children, as well as “habilitative services” to help people with disabilities keep or improve their skills.

A version of this article appeared in print on February 21, 2013, on page A16 of the New York edition with the headline: New Federal Rule Requires Insurers to Offer Mental Health Coverage .

Article By ROBERT PEAR | THE New York TIMES | Published: February 20, 2013
http://www.nytimes.com/2013/02/21/health/new-federal-rule-requires-insurers-to-offer-mental-health-coverage.html?smid=tw-share&_r=0

“He has never had anybody put their hands on him before in his life. He would not have been doing anything threatening to anybody,” said Ethan’s mother, Patti Saylor.

The case has sparked outrage, with hundreds commenting on the sheriff’s Facebook page. The sheriff issued a letter, saying in part, “The death of Mr. Saylor was very tragic and I want to assure everyone that a thorough investigation is being conducted.”

The three deputies have been placed on administrative leave pending the results of the investigation. For the past month, they’ve been on the job.

“The family doesn’t and I don’t understand why they were not placed on administrative leave immediately upon the death of someone who was in custody,” said Joseph Espo, the family’s attorney.

Ethan Saylor was a beloved church member. His pastor says he was known for giving hugs to everyone who walked through the door.

“The week after he died, the seat that he sat in was covered in flowers. Dozens of people had brought flowers to remember Ethan,” said Damascus Road Community Church Pastor Richard Fredericks.

Now friends, family and even strangers want answers about what happened to Ethan.

The sheriff’s office has received so many calls about Ethan’s death, they are considering setting up a call center just to deal with this case.

The sheriff’s office is conducting the investigation into Ethan’s death. Their finding will be sent to the state’s attorney, who will determine if charges will be filed against the deputies.

Below are requests for assistance from Access Living of Chicago and Coalition of Citizens with Disabilities in Illinois (CCDI);
Please forward this information, we all can make a difference... Jim at Ability Chicago.
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Coalition of Citizens with Disabilities in Illinois (CCDI)Action Needed for Home Services
Illinois in-home services are at risk
Illinois in-home services are at risk.

One of the most critical issues for thousands of people with disabilities and seniors in Illinois is in-home services for activities of daily living like eating, bathing, cooking, cleaning, and toileting. The State of Illinois provides two programs that fill this need: the Home Services Program (HSP, for younger adults) and the Community Care Program (CCP, for seniors). Please take immediate action to prevent the failure of these programs, which will significantly impact people with disabilities and seniors. Loss of these programs will also cause the loss of jobs for home care workers.

This issue is important because home services are part of what allow us to live independently. Millions of people nationwide need home services and provide home services. Community living matters!

The Home Services Program needs about $25 million in supplemental funding to finish out FY 2013. The Community Care Program needs $315 million in supplemental funding ($170 million for back bills & $140 million for current program spending) to finish out FY 2013. Although our state is in a massive budget crisis, we have to make sure that people who need home services are not forced to go without critical supports for activities of daily living like bathing, eating and dressing.

Please take action below, if you are seeing this on our website, or at http://www.capwiz.com/ccdionline/issues/?style=D.

Act now in support of in-home services. http://www.ccdionline.org/

Thanks to our friends at Access Living for the information.
###

Access Living of ChicagoHome Services Crisis! Action Needed!
Illinois home services continue to be at risk of severe cutbacks! The Home Services Program (HSP) and the Community Care Program (CCP) need millions of dollars to finish out the year ending June 30, 2013. If HSP and CCP experience major cutbacks, seniors and people with disabilities will not be able to get help for activities of daily living, and home services workers could lose jobs. HSP and CCP save critical dollars for Illinois because they prevent thousands of people from having to go into nursing homes and institutions. CCP serves seniors and HSP serves people with disabilities who are not seniors.

We need your help to ask Illinois legislators to file and pass a supplemental spending bill for HSP and CCP in the amount of $340 million. This would allow both programs to finish the year without cuts, and also address over $100 million needed in back payments to CCP providers.

People with disabilities, seniors, and workers need to know that our home and community-based services network will be safe and secure. Imagine not being able to call on someone to help you get out of bed, eat, bathe and dress. This takes away your independence and your motivation. Home services are CRITICAL for the people of Illinois. Take action today!

Scholarships
Each year the National Federation of the Blind of Illinois (NFBI) awards scholarships to qualified blind students. The scholarships are awarded at the annual convention of the NFBI. The following scholarships are currently available:PETER GRUNWALD SCHOLARSHIP: A scholarship in the amount of $2,000 was established by the NFBI as a memorial to Peter Grunwald, whose work with members of the Illinois General Assembly resulted in implementation of several statutes that have changed what it means to be blind in Illinois.

NATIONAL FEDERATION OF THE BLIND OF ILLINOIS SCHOLARSHIPS:Two scholarships in the amount of $1,500 will be awarded.

KENNETH JERNIGAN SCHOLARSHIPS: Two scholarships in the amount of $1,250 were established in tribute to Dr. Kenneth Jernigan, former President of the Federation, whose extraordinary leadership has improved the quality of life for blind people both here and abroad.

Criteria: All scholarships are awarded on the basis of academic excellence and service to the community. To be eligible for any NFBI scholarship, an applicant must be a legally blind resident of, or student in Illinois, who is enrolled full-time in an accredited two-year, four-year or graduate college or university program.

Deadline: All application materials must be received by March 31, 2013.General Information: Persons who have previously applied for NFBI scholarships are encouraged to apply again. The Scholarship Committee reviews all applications and selects the scholarship winners, who will be notified of their selection by June 15, and will be brought to the NFBI convention in the fall.

On a separate sheet please provide the following information:
1)All post-secondary institutions you have attended with highest class standing attained and cumulative grade point average,
2)High school attended and cumulative grade point average, and
3)Community Service.

Please include the following documents with your completed application:
1) Personal Essay: Along with your application, introduce yourself to the scholarship committee in a brief essay or self-portrait. Consider the essay an opportunity to tell the committee who you are. Describe your strengths, achievements, and aspirations. What is important to you? Who do you hope to become? Has a particular person or experience changed your life? How has your blindness affected you? How do you handle it at school, on the job, and in interpersonal relationships?

2) Two current letters of recommendation.

3) Transcripts: Provide a current transcript from the institution you are attending as well as transcripts from all post-secondary institutions you have attended. If you have not attended an institution of higher learning or have not completed one year of study at such an institution, provide a high school transcript. The form may be photocopied.

The next webinar in the Board's free monthly series will take place March 7 from 2:30 – 4:00 (ET) and will feature an open question and answer session with Board accessibility specialists on the ADA and the ABA Accessibility Standards. Participants are encouraged to submit questions in advance of the session through the webinar site. Questions also can be posed during the webinar.

By Guest Blogger Adam Anicich, PolyTrauma/Blast-Related Injury Executive Committee Member for the U.S. Department of Veterans Affairs (as posted at Disability.gov blog)

In my line of work, I’ve heard too many Soldiers, Sailors, Airman and Marines share their frustrations about their recovery and their concerns about the difficulties of reentering “normal life” after an injury. “I can’t…,” “It’s too hard…” and “I’ll do it later…” are phrases spoken all too often. These Warriors begin to doubt themselves and become overly critical of their limitations – and forget to focus on their abilities. These feelings are understandable – after all they have been through, who can fault them? I know, because I was one of those Soldiers.

Many people with brain/blast injuries, Post-traumatic Stress Disorder (PTSD) and other acquired injuries can feel isolated – either from cognitive difficulties, troubles keeping pace with daily life, lack of focus or just not being able to engage in the same lifestyle they used to. Such isolation not only inhibits a person’s recovery, but also takes a toll on their emotional state. It discourages friends and relationships, marginalizes enjoyment and inhibits professional aspirations.

As a result, many people with injuries or disabilities refrain from enjoying life or impacting society with the zeal and passion that they once had. PTSD can crush a person’s spirits, scars can make people feel trapped within themselves and the loss of a limb can make a person feel incomplete. My challenge to all of you out there struggling with a traumatic or acquired injury or disability is to push yourself to do things you used to enjoy before your injury – find ways to overcome physical limitations, engage your mind in intellectual discourse and discover renewed enthusiasm for life. This is your life – take it back!

As a community, we do however, also have a responsibility – as individuals who have sustained injuries; as family members, friends and caretakers; or as the support network of those individuals with disabilities, to encourage positive attitudes and promote best practices for rehabilitative outcomes. There still exists a stigma about mental health problems and readjustment after combat – but these conditions are treatable! The work of therapists, psychologists and psychiatrists is amazing and making a real impact on people’s lives. Let’s help build an environment that is supportive and prepares our injured colleagues for success.

JACKSON, Ga. (AP) — The execution of a Georgia man who killed a fellow prisoner in 1990 was halted Tuesday at the last minute so courts could consider claims that he's mentally disabled and other issues.
The 11th U.S. Circuit Court of Appeals granted its stay of execution as 52-year-old Warren Lee Hill was being prepared for lethal injection. In a 2-1 decision, a panel of the appeals court said further review is needed of recent affidavits by doctors who changed their minds about Hill's mental capacity.
"In other words, all of the experts — both the State's and the petitioner's — now appear to be in agreement that Hill is in fact mentally retarded," judges in the majority wrote in their order.
The state court of appeals also issued a stay to allow more time to consider a challenge related to the state's lethal injection procedure.
Earlier in the day, the state parole board, the Supreme Court of Georgia and the U.S. Supreme Court had all declined to stop the execution.
"We are greatly relieved that the Eleventh Circuit Court of Appeals has stayed the execution of Warren Hill, a person with mental retardation. All the doctors who have examined Mr. Hill are unanimous in their diagnosis of mental retardation," defense attorney Brian Kammer said in an email.
A spokeswoman for the state attorney general declined comment.
Hill was sentenced to die for the 1990 beating death of fellow inmate Joseph Handspike. Authorities say he used a board studded with nails to bludgeon Handspike while he slept and other prisoners pleaded with Hill to stop. At the time Hill was already serving a life sentence for murder in the 1986 slaying of his girlfriend, Myra Wright, who had been shot 11 times.
Hill has received support from various activists and from former President Jimmy Carter and his wife Rosalynn.
"Georgia should not violate its own prohibition against executing individuals with serious diminished capacity," President Carter said in a statement.
Hill was originally set to be executed in July, but the state delayed his execution when it changed its execution procedure from a three-drug combination to a one-drug method. The state Supreme Court then further delayed the execution after Hill's lawyers filed a challenge saying corrections officials violated administrative procedure when they made the change. The state's high court earlier this month denied that challenge, and Hill's execution was reset for Tuesday.
Hill's lawyers argue that he is mentally disabled and therefore shouldn't be executed. The state maintains that the defense failed to meet its burden of proving beyond a reasonable doubt that Hill is mentally disabled.
Death penalty defendants in Georgia have to prove they are mentally disabled beyond a reasonable doubt to avoid execution, the strictest standard in the country. Hill's lawyers have said the high standard for proving mental disability is problematic because psychiatric diagnoses are subject to a degree of uncertainty that is virtually impossible to overcome. But Georgia's strict standard has repeatedly been upheld by state and federal courts.
Georgia passed a law in 1988 prohibiting the execution of mentally disabled death row inmates, and the U.S. Supreme Court ruled in 2002 that the execution of mentally disabled offenders is unconstitutional.
Hill's lawyers last week released new sworn statements from the three doctors who examined Hill in 2000 and testified before the court that he was not mentally disabled. The doctors wrote in their new statements that they were rushed in their evaluation at the time, they have acquired additional experience and that there have been scientific developments in the intervening 12 years. All three reviewed facts and documents in the case and wrote that they now believe that Hill is mentally disabled.
The state questioned the credibility of the doctors' statements. These doctors met with Hill and reviewed extensive documentation in the case in 2000, but they haven't seen him since and didn't have significant new information in front of them during their recent review, the state argued. Therefore, it is not credible that they are able to refute the testimony they were so adamant about in 2000, the state argued.
The state has cited expert testimony and IQ tests that concluded Hill was not mentally disabled. Before trial, Hill's family members described him as "the leader of the family" and "a father figure," the state notes. He was not in special education classes and served in the Navy, where he received promotions, the state said.
The defense has referenced a state court judge's assessment that Hill was mentally disabled and a test that showed his IQ to be about 70. The defense also cited expert testimony that it is not unusual for someone who is mildly mentally disabled to be able to function at a satisfactory level in an environment as structured as the military. With the new statements from the three doctors last week, all doctors who examined him now agree that Hill is mentally disabled, Hill's defense argued.

Tuesday, February 19, 2013

IL HB 1231, would require health insurance providers to cover the costs of hearing aids for people of all ages, will be heard in the Insurance Committee at 3 PM on February 20th, 2013

Try contacting the House members first since they have the hearing tomorrow. You can also contact the Senators too...in the Senate the bill is known as SB 38. Remember, the bill covers private insurance for people of all ages, for up to $2500 per ear every three years

The bill's sponsor in the House is Representative Dan Brady of the Bloomington area. If your representative is not a member of the committee, please call Representative Brady and state your support of this bill.

Senate Insurance Committee
Chair: William R. Haine D

Vice Chair: Jacqueline Y. Collins D

James F. Clayborne, Jr. D

Michael E. Hastings D

Mike Jacobs D

John G. Mulroe D

Antonio Muñoz D

Kwame Raoul D

Ira I. Silverstein D

Minority Spokesperson: William E. Brady R

Tim Bivins R

Darin M. LaHood R

Chapin Rose R

Dave Syverson R

House Insurance Committee
Chair: Monique D. Davis D

Vice-Chair: Greg Harris D

Republican Spokesperson: David Reis R

Maria Antonia Berrios D

Dan Brady R

Anthony DeLuca D

Scott Drury D

Kenneth Dunkin D

Laura Fine D

Robyn Gabel D

Norine Hammond R

Thaddeus Jones D

Dwight Kay R

Lou Lang D

Robert F Martwick D

Frank J. Mautino D

Thomas Morrison R

JoAnn D. Osmond R

Robert Rita R

Pam Roth R

Darlene J. Senger R

Elgie R. Sims, Jr. D

Keith P. Sommer R

Silvana Tabares D

Michael Unes R

Ann Williams D

you can fill out a "witness slip" online to show your support for HB 1231. The link is http://my.ilga.gov/WitnessSlip/Create/71738?committeeHearingId=10459&LegislationId=71738.

Check the box that says you are a "proponent" (a supporter), and check the box that says "record of appearance only" if you are not going to be in the room. Your name will be read out in committee as a supporter! So it is very important that the legislators hear a long list of supporters.

Monday, February 18, 2013

A FREE webinar offered by the University of Illinois at Chicago and Northpointe Resources Health Matters Community Academic Partnership.

This 2-hour training covers common barriers for children and adolescents with I/DD in choosing foods, being physically active, and coping with stress. Ideas are also provided to change the conversation among health-care providers, parents, and teachers and to encourage children and adolescents to eat smart, move more, and stress less.

AUDIENCE:
Parents/caregivers, educators, and health care providers who support children with intellectual and developmental disabilities.

LEARNING OBJECTIVES:
By the end of the workshop, you will receive the following information with downloadable training materials):

1)increased knowledge on diabetes prevention among children and adolescents with developmental disabilities;
2)enhanced self-efficacy related to supporting children and adolescents with developmental disabilities to eat smart, move more, and stress less; and,
3)improved health advocacy skills for motivating children and adolescents with developmental disabilities to eat smart, move more, and stress less.

Illinois residents: The Workshop is FREE of charge made possible by funds received from The Illinois Department of Public Health.
· Participants Outside Illinois: $20/person for CEU/CPDUs.

Friday, February 15, 2013

In the annual State of the Union address, President Barack Obama addressed several policy areas of importance to the 56 million Americans with disabilities and their families. As the independent federal agency which advises the President and Congress on disability policy, the National Council on Disability (NCD) applauds the significant agenda proposed by the President and recommends the following actions to guarantee full participation and integration in all aspects of society for Americans with disabilities.

The President called for an increase in the minimum wage to $9.00 an hour by stating “in the wealthiest nation on Earth, no one who works full-time should have to live in poverty.”

NCD agrees. In 2010, statistics released by the U.S. Census Bureau revealed that nearly 28 percent of Americans with disabilities aged 18 to 64 live in poverty.

Today, hundreds of thousands of Americans with disabilities earn less than minimum wage under a little-known relic of employment policy that assumed people with disabilities were not capable of meaningful, competitive employment.

As the President said, “America is not a place where chance of birth or circumstance should decide our destiny. And that is why we need to build new ladders of opportunity into the middle class for all who are willing to climb them.”

Twenty three years after the passage of the Americans with Disabilities Act, the time has come for minimum wage to be available to everyone who works, including Americans with disabilities. Over a quarter of a million Americans with disabilities work under the Fair Labor Standards Act 14 (c) program resigning people with disabilities to earning less than minimum wages and the poverty, isolation and segregation that often results.

In our August 2012 Report on Subminimum Wage and Supported Employment, NCD recommended a gradual phase out of the 14 (c) program. The ladders our nation builds to opportunity must be accessible to every American – including those with disabilities. As America works toward increasing minimum wage, implementation of a comprehensive set of supports and targeted investments in integrated employment services to make it possible for people with disabilities to rise to the same heights as other Americans must also be assured.

In addition, the President announced a non-partisan commission to improve voting in America by emphasizing “our most fundamental right as citizens: the right to vote. When any Americans ... are denied that right ... we are betraying our ideals.” A Fact Sheet on the Voting Commission issued by the White House lists voters with disabilities and “physical barriers” among the issues to be corrected.

NCD appreciates inclusion of the difficulties faced by voters with disabilities as part of the Commission’s work. A Government Accountability Office (GAO) report found as recently as 2008, only 27 percent of polling places were barrier-free. In fact, the Federal Election Commission confirmed that, in violation of state and federal laws, more than 20,000 polling places across the nation are inaccessible, depriving Americans with disabilities of their fundamental right to vote. People with disabilities and senior citizens are particularly disenfranchised by long lines at polling places and by constraints on and, in some places, the discontinuation of early voting.

To address this disparity, NCD has been collecting the experiences of voters with disabilities in the November 2012 General Election from across the nation in coordination with the National Disability Rights Network and EIN SOF Communications. NCD will issue a report on our findings later this year.

NCD urges the Voting Commission to consider the findings of our upcoming report and to include voters with disabilities on their Commission.

The President also stressed the importance of key reforms to realize cost savings in the Medicare program, including the shift from a fee for service payment system to a managed care model designed to pay for performance. NCD understands the importance of shifting to payment models that both manage costs and increase quality for our health care financing infrastructure. However, it is crucial that people with disabilities and seniors retain the ability to have their needs met.

Over the last two years, NCD has conducted a detailed exploration of managed care within Medicaid, issuing comprehensive recommendations on due process safeguards, program design, performance measures and other facets of responsible managed care frameworks that consider the needs of Americans with disabilities without causing adverse consequences on the quality of care we receive. As the Administration considers various measures to enhance health care quality while controlling costs, NCD stands ready to apply this expertise to Medicare reforms.

As President Obama affirmed, “the responsibility of improving this union remains the task of us all.” NCD looks to continuing its role in developing and promoting robust disability policies in close collaboration with the Administration, Congress and the public.

-- Jeff Rosen, Chairperson
On behalf of the National Council on Disability

NCD statement: http://www.ncd.gov/newsroom/021413

NCD's website: http://www.ncd.gov

The captioned video of the President's speech can be found at: http://www.whitehouse.gov/photos-and-video/video/2013/02/12/2013-state-union-address.

RESOURCES:

National Voter Registration Day is Sept. 26th - Register Online (CLICK IMAGE) takes you to Rock The Vote!

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